please let me hear your positive stories re going from decompensated to compensated

[Rshc]

My partner was diagnosed with cirrhosis in Dec and underwent a medical detox from alcohol. He was very poorly and remained in hospital for 3 weeks. Since then he has been eating well and not drinking. His bilirubin has come down from 256 to 60 and his blood platelets look good at 160. The doctors all say that they hope he will become decompensated with time. Currently he is struggling with excess fluid on stomach and legs (legs very painful) which make him very tired, he says if it wasn't for this he would feel almost normal. He has struggled with diuretics and had to come off them due to very low sodium and potassium but has just started to go back on a low dose to see how he goes. I guess I just want to hear some stories of hope. He is working so hard to get better

[Rshc]

Sorry, he is currently DECOMPENSATED and they hope he will become compensated given time and of course good diet/not drinking

[Aotea2012]

Provided he remains alcohol free, eats a good diet and does some exercise then there is every reason for him to become recompensated. It takes time, it’s taken a while for his liver to get to this position so it’s bound to take time for it to improve. Taking the cause away is the most important thing...so it really is a life long commitment to abstinence to remain well. I was in a similar place to him last year and am now feeling very well. All bloods are normal and I now take no medication whatsoever. It’s taken a year I would say to feel really well, but I’d say I was feeling better after about a month after discharge, my ascites disappeared after about 4 or 5 weeks after discharge and I was mobile within about 2 or 3 weeks. Then it was a bit of a journey....high calorie high protein diet to start...then slowly as my liver function improved high protein diet low in salt. Exercise was key for me too. Walking to start then running and horse riding as I grew stronger. Just had a review and a happy consultant and an even happier patient. Alls good. So with some effort he could go onto to live a normal life.

[Rshc in reply to Aotea2012]

thanks so much. I am as sure as I can be that he will not ever drink again, he is eating well and thankfully not feeling sick or anything. Just this awful ascites and edema which is really stopping him from being able to exercise

[Aotea2012 in reply to Rshc]

I was on diuretics for about 6 weeks after discharge. I was ok on them apart from needing the loo a lot! I was strict with salt. The ascites went away and thankfully hasn’t come back. It’s difficult to get mobile with all the fluid and my legs were like tree trunks so struggled with walking. It just takes a bit of time for the body to normalise. If he’s feeling better then it is improving.

[bintcliffe]

Hi There I had triple organ failure, I was severely decompensated however I did what my consultant told me and eventually my liver became compensated it did take about 2 years to look at me now you wouldn't know that I had chirosis listen to the professionals and keep doing what your doing I wish you the very best X

[Rshc in reply to bintcliffe]

so happy to hear you are doing so well. That gives us hope

[LaLola77]

Can you get ascites without drinking?

[Rshc in reply to LaLola77]

my understanding is that ascites is to do with liver function which of course can be to do with alcohol but doesnt mean you are drinking now. My partner drank a lot in the past and doesnt drink anything now but it has only been about 3 months since he stopped

[Scrags64 in reply to LaLola77]

Yes, I have never drunk alcohol, but I have had ascites for about three years. On a bad day I look about 20 months pregnant, but then it goes down again of its own according. X

[Lola1977 in reply to Scrags64]

I’m really sorry to hear that, seems unfair

[Scrags64 in reply to Lola1977]

Sure does, but at least I am still here after dieing twice just over three years ago. I try not to let it get me down. Baggy tops are wonderful lol. X

[AyrshireK in reply to LaLola77]

Ascites is a symptom of decompensated cirrhosis and can occur regardless of what caused the cirrhosis in the first place.

[x007jcp]

Been there and back twice. Horrible situation to be in and my sympathy. I know it can be gruelling to stop and the prospect of total abstinence forever is incredibly daunting - I struggle with it every day. However, follow the docs and return to normal size and mobility is possible. Be patient and stick in there- it's worth it! Best wishes, X007

[Rshc in reply to x007jcp]

thank you, his bloods are improving all the time just having a bad week with very bloated legs and feeling tired. I wish there were something I can do but stories of hope really help.

[kyia]

My partner was diagnosed with alcohol-related decompensated cirrhosis in October 2017 after having been rushed to A&E, vomiting blood and not being able to breathe due to severe ascites. The emergency doctor was so concerned about his prognosis that she asked that I contact his daughters to come to the hospital urgently. He survived that initial admission and was discharged, still very weak and poorly.

He gave up drinking immediately, but was still suffering from ascites and severe muscle wastage, with no appetite due to the ascites, so it has been a very long road to try and build his strength up. He was not allowed to take Spironolactone, as his blood sodium was low, and had to return to hospital for drains every 4 weeks for several months, and developed an umbilical hernia from the fluid build-up. He had a follow-up with his liver consultant in February 2018, who was pleased with his progress, and pronounced that his liver was compensated again.

Cut to the end of March 2018 - the umbilical hernia became incarcerated and he needed emergency surgery, which, although successful, caused the liver to become decompensated again, and left him with a low-grade infection in the fluid in his belly.

After a final drain, things settled down again, with antibiotics to combat the infection, and slowly, his strength returned. At the beginning of 2018, he needed a wheelchair to get to his hospital appointments, and now he can walk miles.

There has been no more ascites and he has no symptoms 4 years on.

Things can definitely improve - it may take time, but there is always hope!

[Rshc in reply to kyia]

thanks so so much, it sounds similar in that my partner cannot really take diuretics due to low sodium.

[kyia in reply to Rshc]

Has their been any discussion about them draining the excess fluid in hospital? This can be done as a day case in many hospitals and the patient often has direct access to the unit, saving the need to contact either GP or consultant. My partner needed to be drained 4 or 5 times before things settled down on their own.

[Rshc in reply to kyia]

thank you for your reply. He is currently having 3 weekly drains where they take about 12 ltrs off him - there is still more in there but they don't like to drain him for longer than 6 hours. I am praying that he gets to a point where he doesnt need to be drained

[kyia in reply to Rshc]

I can remember feeling like that. It's so hard to stay positive when improvement is slow. You just have to take each day as it comes. My partner had to have drains for about 3 months. Hopefully, things will get better for your husband soon!

[pushthrough]

They never said I was decompensated but I’m pretty sure I was for about a month. I had many symptoms including ankle swelling. My blood levels were astronomical. I took diuretics for 2 weeks and stuck to a strict diet. Under 1000 mg of salt a day. I began getting severe pain in my joints so my doctor took me off the diuretic. After a month I felt much better. However it took about 6-8 months of No alcohol, healthy diet and walking to feel better than I ever have in years.

[Rshc in reply to pushthrough]

that's amazing, well done.